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» LymeNet Flash » Questions and Discussion » Medical Questions » Disulfiram

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Author Topic: Disulfiram
Tcoach1
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Started on this about week ago. doing 1/2 tab every 3 days/ Never really had a noticable herx until this. Geez. Anyone else doing this?
Posts: 153 | From Tampa | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
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Are you also taking traditional antibiotics for an optimal response?

Do you also have Babesia and/or Bartonella?

Quick search on Lymenet;
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/137824#000010

I have not tried Disulfiram, hopefully someone will post about their experiences.

Posts: 2035 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
Charles12
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It got rid of whatever residual Lyme infection I had.

I think everyone should take it.

Posts: 139 | From Virginia | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
overlyme
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not available right now where i live

--------------------
been there done that!

Posts: 72 | From ny | Registered: Mar 2014  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Coach .. I hope you took a look at the thread Bonnie posted. There is a lot of good information there.

Best of luck!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94293 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Legolas
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To all the people taking disulfiram:

DO NOT COMBINE DISULFIRAM WITH HYPERBARIC OXYGEN!!!

I started diving with no symptoms and 1 hour later my feet were burning like hell. I could barely walk when i got out of the chamber because of that instant neuropathic pain.

The hyperbaric oxygen causes oxygen radicals which in combination with disulfiram cause nerve damage.

It's now a couple weeks later and i largely recovered from it though. But don't make the same mistake!

Posts: 6 | From Belgium | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
Charles12
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quote:
Originally posted by overlyme:
not available right now where i live

Have you tried a compounding pharmacy?
Posts: 139 | From Virginia | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Thanks for warning everyone, Legolas!

Hope you recover soon!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94293 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
nefferdun
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I took it for 49 days, 41 days at 250mg. It was extremely difficult to tolerate. I was so exhausted I could hardly stand and slept 12 to 15 hours a day. I got air hunger so severe I felt like I was suffocating.

I could not understand anything. I told my husband to speak very slowly and simply so that I could grasp his words.

When I began getting pin like stabs in my feet, hands and face I quit. Neuropathy is one of the serious side effects people can get.

Doctors now recommend people go low and slow. It is not thought to kill bartonella so if you have that it will flare unless you take something else. When I explained my experience to a LLMD he said it is thought to break down biofilm causing the Bart flares.

I thought my primary problem was bart. Now I believe I also have Babesia. Two weeks after I quit DSF I started Bactrim DS and Biaxin which I could not tolerate before. I had rapid improvement for a couple of weeks. My energy improved and my headaches went away.

Since then though I have gotten worse. I am dizzy most of the time. I did a round of Coartem and will start Rifabutin tomorrow.

I may try DSF again but much lower and slower.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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lymenotlite
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Brussels posted this European site in 2018. I do not think it was available in English at that time but now is:
http://www.retzek.info/

Disulfiram Against Borrelia and Babesia:
http://www.retzek.info/disulfiram-against-borrelia-and-babesia-facts-and-research/

Posts: 655 | From WA state | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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I would caution those who are allergic to latex, because the use of Disulfiram (Antabuse) is contraindicated for those who are.

I read that when I was researching into my adult son trying it.

Posts: 8649 | From Illinois | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
S13
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Disulfiram is just highly toxic to the body. Yes it also kills lyme, but dont mistake severe side effects with a herx.

This article explains it in more detail:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7184924/

In all honesty i have not really found any evidence that this is a so called "game changer"...

A significant portion of people who take it do very badly on it. Others seem to have some benefits but also severe side effects. And only a minority seem to get cured by it (but these were definitely not the highly sensitive lyme patients that seem to to badly on any treatment). Typically the people who get cured are the ones who were already doing sort of good on antibiotics, but they relapse once they stop. By taking disulfiram they can get over this relapse.
At least that is what i make of all the case reports.

So if you are one of those highly sensitive patients, dont go and put all your hope on this.

Posts: 335 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
S13
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quote:
Originally posted by lymenotlite:
Brussels posted this European site in 2018. I do not think it was available in English at that time but now is:
http://www.retzek.info/

Disulfiram Against Borrelia and Babesia:
http://www.retzek.info/disulfiram-against-borrelia-and-babesia-facts-and-research/

Interesting site, but all the pictures they show of so called "Bartonella" are just crenated red blood cells:
https://www.sciencephoto.com/media/427202/view/crenated-red-blood-cells-sem
https://en.wikipedia.org/wiki/Crenation

They are very common on dark field microscopy slides. But they should not be mistaken with bacteria inside red blood cells.

Posts: 335 | From The Netherlands | Registered: Nov 2013  |  IP: Logged | Report this post to a Moderator
lymenotlite
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S13, thanks for that info.
Posts: 655 | From WA state | Registered: Jul 2011  |  IP: Logged | Report this post to a Moderator
   

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